Tag Archives: death from diabetes

On this, a special and incredible day of remembrance. After I wrote about it and it was sent to everyone this morning. After working so hard over the years to push down so much of what I saw; to work so hard to place things in compartments in my mind and in my memory………this absolutely comes from the OMG you have got to be F****’en kidding me files.

I received the link below from a friend of mine today with a note that simply stated: “Don’t know if you ever saw this but today being 12 years later, you may want to.”

You do not have to watch the entire clip but what caught my attention starts at about the 27 second mark and lasts about 1 minute. It is not an earth shattering clip but when you are part of something that only happened because of a series of events of which you could only react and not control; and you thought it would be safely tucked away only in your memory; to have it all of a sudden played back to you—-that small clip becomes enormous.

I was tired, I had been all over lower Manhattan, I went right from work about 21 hours earlier after they shut down our building, I had not slept. They asked me for a business card, shoved a microphone in front of my face and all of a sudden……boom—-I’m on CNN.

I literally just saw it for the first time about an hour ago.

I cannot tell you how my hands are shaking right now. This clip is bringing everything back so quickly and unexpectedly. I am so grateful it was shared, it just reminds me even more about what I wrote earlier today.

This reminded me of the oh so many who helped, and people are incredible; truly.

Those who know me well know my story with 9/11. The 36 hours I spent down there from 9/11 to 9/12 provided images that many could not have nightmares about. It was a day that transformed my life, as it did for a grieving nation.

Every where you look you see the date 9/11 with the words ‘Never Forget’ right next to it or below it. But are we forgetting?

This was not just a day of names that must never be forgotten. It was a spirit. To those of us who lost loved ones and friends of course there will be thoughts today. Local stations will cover the reading of the names of the lost. A bell will sound.

CNN showed the first two people reading names, went to commercial (and even dropped the little box they usually kept in the lower corner showing the people reading names from around the country) and when they came back from commercial break; continued the news as normal. That is their choice. But if we are to remember today, it should be remembered as a “STOP AND REMEMBER” day, and not merely a ‘today in the news…..” type story. As if this date is just a normal day.

This is not a normal day. This was not a normal day. This will never be a normal day again.

To those that know my story also know that I have shared of not only the horror, but the incredible spirit that I witnessed 12 years ago. That American Spirit that had people helping far beyond what anyone could have ever imagined. The rest of the country had this spirit also.

The best way to remember this day is to not only recognize the names of those who were killed in Washington D.C., Pennsylvania, and New York but to renew the spirit we showed each other.

Lately, have you even read a response if someone says they are Republican or Democrat on FB? Have you seen the personal attacks from our elected officials on Capitol Hill? Have you ever seen so many statements of; “….this is my opinion and if you disagree you are wrong and by the way, you’re a pig too….” attitudes. Just hurtful, sometimes.

I get it. Freedom of speech and disagreements and discussions are healthy. THAT is not to what I am referring. The Spirit of America; is it getting pushed further and further into the background?

Lately, this is a country of division.

Political belief, race, sexual orientation, and even having an opinion; if it is against the mainstream (or just the loudest) we are very quick to ‘pounce’ in retaliation.

Twelve years ago we saw a different America. I remember seeing a taxi cab driving in New York and the air was so still you could actually hear the rubber of the tire on the road as it drove up the street. People nodded to each other, said hello, or at the very least smiled to passing strangers as if to say, “we both understand”. ON THAT DAY, I saw people come from every corner to help, to want to help, to need to help; in any way no matter how small.

This was not a naive America; this was an America that knew what we meant to each other. It’s unfortunate that it took thousands of deaths and 4 planes to be commandeered out of the skies to remind us…….but it did. It reminded us how important we still are to each other from every walk of life; we are Americans.

The more we ‘go to commercial breaks’, the further we will get away from what is important. It’s not just a list of names, it was not only the death of so many; it was a birth of spirit we had forgotten existed. It is this spirit that also needs to be remembered.

Let’s not wait for four more planes, or worse, to have to be reminded again.

I remember hearing the incredible Dr. William Plonosky speak and when discussing diabetes and depression he stated that he would be a bit worried if someone was diagnosed with diabetes AND WAS NOT feeling any depression. That always stuck with me. Recently I saw a FB posting about grieving; when grieving should stop over the diagnosis of a child with diabetes.

Grieving. Depression. Two very powerful words somehow connected and yet, two completely different types of processing that we faced when our children became diagnosed.

Two things I cannot compare are that number one; I have not been diagnosed with diabetes and surely what I feel as a parent is different from what someone WITH diabetes would feel. Number two; is the word grieving. When I think of the word I’m immediately faced with those who lost a child to this disease; they can grieve, what right do I have to grieve?

So I immediately know that there are varying definitions of the grieving process. Sure we go through some of the levels of grieving; denial, anger, depression, accept (and some add bargaining in there) but as a comparative in my own life, I would definitely say I went through a ‘level’ of the grieving process.

Jill still said it best when she stated, upon Rob’s diagnosis in 2009, that her anger is at the fact that another (Rob was our second child diagnosed) childhood was stolen.

It became clear to me at that point that we do grieve for what is lost. But the other side of that realization is that we still have a lot more than what we lost. It was realizing that point in my life that I started to turn the grieving process around .

As I have touched upon before, I suffered a huge loss of someone when I was younger. The absolute pain of knowing that that someone would never be coming back was overwhelming. Leaving the discussion of faith on seeing loved ones again aside for just a moment, the idea of not actually seeing this person again was a hurdle mountain-high in my life to come to grips in understanding. It was huge. My faith has my heart in the right place but for ‘the now’, a pain remains 32 years later.

So for good or bad; I had a comparative in my life on the ‘grieving process’ with diabetes. The bottom line is that my children are still here. We experienced the pain of having some of the simple things being taken but it is a huge ‘light-turned-on’ thought process to fully understand what it is like to have diabetes come into your life and what it is to have someone you care deeply about leave forever. Quite frankly, I would much rather of not had either.

I honestly do not think I ever experienced the denial of Kaitlyn and Rob’s diagnosis. I knew exactly what we needed to do and that was to ’embrace it’ from the get-go. There was only one way that diabetes was not going to win in our home and that was with knowledge. I mean deep-rooted knowledge. Not the, “I heard from so-and-so” type knowledge

Perhaps it is in my namesake (Thomas, look it up 🙂 ) that gives me doubt, but I have always needed to find out things for myself to fully learn. I take very little at face value. If you ask me about the grieving process pertaining to a diabetes diagnosis, I would share that knowledge is the ultimate equalizer.

And even at that understanding life can still be derailed. Do I still have moments of sadness for the many reasons diabetes is in our children’s lives and can get us down? Yes. That aspect does not go away. And quite frankly, it is a reminder for me that our work is not done. My diabetes involvement pretty much has me at 24/7 but it pales in comparison to the 24/7 of our children’s experiences actually living with diabetes. And until we can get rid of that feeling for them; we need to all keep doing what we need to do.

For them, for ourselves, for a cure, for better management, for helping others, for better education, for camps, for advocacy—-because at the end of the day if I can minimize just some of my grieving by trying to move the diabetes dial just one notch for good….it is one notch I have less time for grieving. I’ll take that any day of the week.

I know that Monday is everyone’s favorite day of the week but it IS the beginning of a new week to make something happen. Or are you thinking, “here we go again’ with the same ol’ week doing the same ol’ thing?

We cannot change what we are given, but we can change what we do with it. Let’s make that choice that we will do something different today. As big or as little as you think necessary; but let’s change it up.

Do not ask your child the second they come in the door “what their number was”, ask them how their day was instead.
When in line for coffee tell the cashier that you are paying for the next person’s coffee also.
When someone does something at work that is ‘cool’, let them know.
Tell your spouse/partner that you appreciate the fact that they do more for your child’s diabetes and how much it means to you.
Call your parents and let them know how much you appreciated them and all they did.
When people think something is funny at the expense of others….do not fuel the fire.

Too much?

Okay; try smiling at a stranger.
Try holding the door for an extra second or two for someone who is “just outside” two steps from the door.
Try not being on a cell phone while paying for someone and look the store associate in the eyes and say thank you.

Let’s call it, “Change-it-up-Monday”.

Because no change is a big change unless it starts as a small change; and those small changes add up. Let us know what you did differently today.

I want to be 100% clear that I’m not judging one way or the other with today’s article. My answer and what others say; is not your answer, nor should it be. This is one of the toughest articles I have written but I just felt it needs to be addressed. Perhaps it might open a discussion and if that happens, and one family feels the need to change and does, we move forward and that is always a good thing. If it helps you somehow deal with diabetes just a little bit better, that is not such a bad thing either.

(Editor’s note added at 5:15pm EST—when I wrote today’s article, I had no idea that today was National Grandparents Day)

SO I do not have to clarify throughout this article, when I say grandparents I mean your parents, your spouse/partner’s parents, your ‘ex’s’ parents (when you ‘ex’ is the parent of the child in the household with diabetes).

Again I ask you to reply (parents, grandparents, and every thought is welcomed) here as oppose to the FB page where you saw this post so everyone can be part of the comments and can read, and can learn—-let’s do that together.

That sentence probably had one of two reactions in the pit of your stomach. One being, “thank God for my parents because they are amazing when it comes to my child with diabetes”. Or there is a pain that is there because the relationship with your parent is not what it should be, could be, or was before diagnosis became the new normal.

I have talked to literally hundreds of grandparents in my life about caring for a child with diabetes. My results are skewed, I admit, because much of these conversations occurred with grandparents while attending a Children with Diabetes Conference. If a grandparent is attending, they are already looking to become involved.

One of the first questions to ask yourself is what was the relationship before diagnosis? If it was strained before, do not all of a sudden think that diagnosis will help; but in some cases I have heard where the relationship changes for the better and I have also heard that diagnosis resulted with grandparents greatly distancing themselves like never before after diagnosis; there are no hard-and-fast rules.

There is a bumper sticker I saw once and it said, “If I knew they would be so much fun, I would have just had grandchildren.” Many grandparents will laugh at this and smile as they admit, ‘at the end of the day, they (grandchildren) go home.”

That is the ‘once removed’ topic. Outside of the percentage of grand parents who live with, or care for the grandchildren daily, the kids do in fact ‘go home’. As I travel and speak to parents, I have heard very sad tales of how grandparents just could not handle diabetes. I have written and spoke many times that in many instances grandparents are the most ‘forgotten group’ during diagnosis. They want to help but do not want to be where the parents’ do not want them and that balance is hard to find.

Some dive right in. Others either do not know where they belong, have no desire, or are scared beyond our wildest notion of what runs through their heads. Now I’m sure that many ‘a professional’ will tell you that there needs to be a dialogue created to see how this might all play out. That dialogue, in some cases. is as much a problem as the problem itself.

If the ‘non involvement’ is due to the possibilities that they may live too far away or the parents HOLD ON to too much of the care and DO NOT allow grandparents involvement (for whatever the reason), is not what this is about and you need to ask yourself if it is and if YOU CAN CHANGE something to make it work, you need to take those steps.

I think it’s important to understand that what we ‘would like’ is not always what it is; and what it is may not be subject to ever change. If everything that can be done is done to include grandparents and grandparents do not choose to be involved, it is not your fault.

It is not the ‘fault’ of your parents either, it’s their choice. We may not agree with it, it may infuriate us, and above all it may really hurt us; but if it cannot and will not change, it becomes up to each of us what to do next.

As if it is not enough to deal with diabetes itself to also have to deal with a parent or family member that is not involved the way we think they should be can really be frustrating; but it comes down to the choice being up to them. Whether we like it or not.

I also know that we cannot merely ‘justify’ those bad feelings away. The entire situation can not be resolved by reading anything I can write or jus say ‘that’ will not bother us. I DO KNOW that you are not alone. Like the diagnosis of diabetes itself, we all learned that we are not alone, and neither are you in this instance.

I witnessed a FB thread recently and I saw many people try to help. I also saw that certain situations may also come down to the fact that the situation will just not change no matter what others may suggest. No one knows like you know. Coming to grips with that point is up to you. Just as we worked through the fact that no matter how much we want, no matter how much we were in pain, we came to grips with the fact that a diabetes diagnosis was here to stay.

You were strong enough for that and you are strong enough to handle this. Just as you worked through focusing on your child and did not compare what you go through or what others go through dealing with a disease; do not compare what other grandparents do or do not do; again focus what YOU NEED to do with your child’s diabetes.

It will take time. It will still hurt. It will still anger you. But if everything you tried to include grandparents in the mix has not worked and that RULES YOU, your child will lose. No one has been better at avoiding that than you.

One can only hope that something at some point will ‘turn on the light’ in the grandparents’ life. Should that happen, be ready to help them help you; if it does not happen know and remember this; you STILL ARE THE BEST THING in your child’s life………some days you need to be reminded that having you may very well be all your child needs.

Something for free????? There is a catch, right? Nothing is for free. Why would someone give a weekend away completely for free? Can’t be true, can it?

Well here is the world’s best kept secret and you have a shot to take part. Pump Wear is a company that has been around for a while and it is run by moms. Moms who understand, moms who care. They have been doing this for six years, and for the seventh year; YOU CAN BE THERE.

Imagine the entire family getting away together for a Mother’s Day 2014 weekend (they plan something special for the moms too) for horseback riding, camp activities, boating, fishing, fun, fun, fun, all for free……you just get there and everything else is done, done, done.

From their website about this incredible program and why they do it.Our goal has always been to help families enjoy all the wonderful things that childhood has to offer. With the daily stress of living with diabetes we want to be able to provide a haven for families to take a breath and enjoy time with their family and an opportunity to make friends. We understand the high cost of diabetes and the many life changes that occur and wanted to truly support an organization that offers our families the ability to spend 2 nights and 3 days in a beautiful setting with wonderful friends and lots of activities. The Double H Ranch is that place. We would like to offer 15 families the ability to come to this ranch and have fun and make friends.

The camp grounds are none other than Paul Newman’s “A Hole in the Wall Camp” in Lake Luzerne, NY. What an incredible opportunity to get away for a weekend you will never forget. So if you live too far, send this to a family who lives with T1 Diabetes anywhere in the Northeast—-what an incredible opportunity.

Sent to karlya@optonline.net and in the subject line please write ‘Parent’s Story’. Including State and pertinent information, share your feeling as well. PLEASE ONLY SHARE YOUR STORY IF YOU WENT FOR AN INITIAL DOCTOR’S VISIT AND THEY MIS-DIAGNOSED YOUR CHILD AND SENT YOU ON YOUR WAY. Thank you all….these will add powerful testaments.

I am in discussions with someone who might help educate Family Physicians (Pediatricians would be next) on a fairly large-scale to administer a protocol for (at least) a urine sample when symptoms in any shape or form resemble a possible T1 diabetes diagnosis (whether it be flu, sever back aches etc etc). At the very least it could/might be an education campaign; our discussions are in the very early stages but my contact is very interested in helping,

What I need from you.

I am trying to collect every media story I can for any child diagnosed with T1 diabetes upon their death.

Please send to karlya@optonline.net and in the subject line please write, “Media”. Do not assume that it was so popular that I probably received already. I need to create a case for the person I’m speaking to and I could use your help. Do not send any stories/links prior to January 1, 2008.

Let;s start to change this once and for all. No child should die upon diagnosis right after seeing their family doctor. No Child.

Can anyone on this living earth shine a light to help me understand this type of behavior in any shape or form? Anger just does not adequately describe my feelings on this at all!!!!

Why did this beautiful young lady need to go through this?????

This story comes from Madison, WI.
A mother and father who prayed instead of seeking medical help as their daughter died in front of them were properly convicted of homicide, the Wisconsin Supreme Court ruled Wednesday.

Eleven-year-old Madeline Kara Neumann died of undiagnosed diabetes on Easter Sunday in March 2008 at home in the central Wisconsin village of Weston. Prosecutors said her parents, Dale and Leilani Neumann, ignored obvious symptoms of severe illness as Kara became too weak to speak, eat, drink or walk, choosing to pray rather than take her to a doctor.

The Supreme Court’s decision said the Neumanns don’t belong to any organized church but believe visiting a doctor amounts to worshipping an idol rather than God.

Sometimes I’m left to only shake my head and realize the more I am around, the more I just might see everything there is to see. This is just all sooooo sad. I cannot even bring myself to discuss the court’s ruling; I’m too upset by how we got to this point.

I will listen to an explanation if someone has one….I really will….so please share if you have any insight. But as of now……..I. Just. Do. Not. Understand.

This is a discussion, a tough discussion, but hiding from it WILL NOT MAKE IT go away.

When I read a comment like; “….my child was diagnosed a year ago and I set my alarm to wake up 3-5 times to check, just to be sure……”; I am compelled to say something. And there are other comments like this that I have read. A dialogue should be had, and I seek input on this difficult subject from our community.

This may be tough to read but perhaps we can all help each other.

The rules: There is no right or wrong—-anyone can say anything. This is for all of us to learn. What do you think, what do you feel, and what do you do? Please ‘reply’ here and not on the FB page so all can read.

To be very clear, if you feel you must wake up numerous times than the call is always yours. Is it wrong or right has to be your decision. But as the late (and great) Dr. Richard Rubin taught me; everything is a balance.

How long can ANYone wake up 5 times a night? There is a balance and you should discuss with someone who can advise you.

Can our children die in the middle of the night from a glycemic reaction? Yes.

Is diabetes a disease that can cause this? Yes.

The balance must be found to know how to monitor. to the best of our ability, a point where we feel comfortable that we do not to stand over their bed.

I, (me, my opinion only) always felt that giving my kids the keys to the car was one of the scariest times in my life. I hate cars. They kill. I mean really kill. It was an absolute fear. I have picked up enough bodies from my firematic days, and seen the horrors enough time. I fear them. I hate them.

Got it?

I also know that getting your license is a rite of passage. I needed to find a balance and i searched high and low for it.

FOR US, diabetes through the night is the same thing. It is a struggle, it is a balance. It is finding when can one person wake up; when can another.

I have said this a thousand times; we can and do not live in that fear. To we recognize it? Absolutely. We (and I include my children in this) do not live in the fear of dying in the middle of the night.

I am speaking from conversations that I have had with them. Are they afraid that it could happen? You bet. They respect the fact.

Let me say that again, they respect the fact. That means that they do what they do; we do what we do; all to take te steps to make sure that it doesn’t happen.

But it is not a life of fear. We do not ‘just think’ they will wake up if they are low. We check. We take turns.

I cannot tell you the ‘routine’ that you need to find. I JUST CANNOT TELL YOU WHAT YOU CAN DO….but I can share with you to start to find the balance. If you live by the fact that YOU MUST wake up 5 times a night; I will not tell you not to do that because you will not hear me—-I will tell you that you should start to discuss with others.

Why do some people wake up once a night and seem okay about it? Do people who lost a child wish they did things differently?

Today’s article is to commence a dialogue; not to tell anyone what they are doing wrong. I seek input from EVERYone so people know how to find that balance.

Good luck to all of us as we battle this ugly monster. Please share what you feel.

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.